Does Data Sharing in Consent Actually Reduce Participation?

Examining Data Collection Type and Concern Resolution

Jürgen, Tina, Johanna, Johannes, Talha

20 March 2025

Evidence so far

More general challenge: Participants often don’t read (Geier et al., 2021; Parfenova et al., 2024; Pedersen et al., 2011) or understand consent forms (Pietrzykowski.Smilowska.2021?)
Preliminary evidence
- No effect of data sharing clause on participation (Fichtner et al., 2023)
- Participants want their data to be shared, to help science and help others (Mozersky et al., 2020; VandeVusse et al., 2022)
- Even for very sensitive topics, participants agree to share data (Campbell, Goodman-Williams, Javorka, et al., 2023; Kuula, 2011)
Dialogue about data sharing increases consent(Campbell, Goodman-Williams, Engleton, et al., 2023)

Research Questions

Do participants read informed consent forms?
Does the information on sharing data influence the participants’ willingness to participate?
moderated my data type?
Does the option to clarify concerns about the informed consent make a difference in the willingness to participate?

Study 1

Do participants read
informed consent forms?

Study 1

Design

Re-use of log-data from past online surveys, that…
- measured dwell time on the consent page,
- allow re-use of their data according to the informed consent
Sample
- [Teachers, students, …]
- \(N_{participants} = ...\) participants
- from \(N_{studies} = ...\) online surveys ([year begin - year end])

Study 1

Measures

Dwell time on consent: Reading speed (as words per minute):

238: average (silent) reading speed (English) (Brysbaert, 2019)
> 500-600: loss of information/comprehension (skimming)
> 900: information falls out of working memory before being comprehended (Masson, 1983)

Additional coding

Which population? [students, teachers, public, researchers, …]
Participants incentivized? How? [none, money, …]
Topic of study? [sensitive, somewhat sensitive, not sensitive]

Study 1

Statistical analysis

Study 2a

Conceptual Replication (and expansion) of Study 1

Do participants read
informed consent forms?

replication part
expansion part

Study 2a

Conceptual Replication (and expansion) of Study 1

Procedure: Presenting the actual consent, then if participants agree…
Measures:
Dwell time
Self-reported reading engagement
Understanding (e.g., via multiple-choice)
Controls
knowledge (trust?) about typical process of research data handling

“Will the data be shared after the project is completed?”
No, all data will be deleted.
Yes, data will be shared with researchers.
Yes, data will be shared with the public.
Yes, data will be shared via the University’s secured website.
Yes, data will be shared via a trustworthy archive.

Study 2a

Conceptual Replication (and expansion) of Study 1

-> Cluster Analysis? :(

Study 2a

Conceptual Replication (and expansion) of Study 1

Taking into account prior knowledge regarding research data handling
Structural model only (without measurement models)

Study 2a

Conceptual Replication (and expansion) of Study 1

Trouble with dwell_time being skewed? -> log-transform?

# Define the SEM model
model <- "
  # MEASUREMENT MODELS
  knowledge       =~ knowledge1 +       
                     knowledge2 +       
                     knowledge3 +       
                     knowledge4
  read_engagement =~ read_engagement1 + 
                     read_engagement2 + 
                     read_engagement3 + 
                     read_engagement4
  understanding   =~ understanding1 +   
                     understanding2 +   
                     understanding3 +   
                     understanding4

  # REGRESSIONS
  dwell_time      ~ knowledge
  read_engagement ~ knowledge
  understanding   ~ knowledge

  # COVARIANCES
  dwell_time ~~ read_engagement
  dwell_time ~~ understanding
  understanding ~~ read_engagement
"
fit <- lavaan::sem(fit, data = data)
summary(fit, standardized = TRUE, fit.measures = TRUE)

Study 2b

Does the information on sharing data influence the participants’ willingness to participate?

(for different data types?)

Study 2b

Procedure:
1. Description & consent of fictitious study presented (see on the right)
2. then questionnaire
Design: 2x3 (within?-)between-subjects design
Factors:
- Data-sharing section (included vs. not included)
- data collection type (video recording vs. interview vs. survey)
Randomized:
- topic of study (varying degrees of sensitivity)

(Hover over examples to zoom)

Study 2b

Measures:
- Willingness to participate (6-point Likert scale)
Treatment checks
- perceived sensitivity of topic of study
- Dwell time
- Self-reported reading engagement
- Understanding

(Hover over examples to zoom)

Study 2b

Structural model only (without measurement models)
perceived_sensitivity as control

Study 2c

Does the option to clarify concerns about the informed consent make a difference in the willingness to participate?

Study 2c

Effects of information on concerns

Study 2c

Effects of information on concerns

Pilot Study

Show consent
Open question: “What would be your greatest concern?”
Open question: “What would dispel these concerns?”

Analysis

Synthesize topics in concerns
Evaluate whether participants want informational or emotional response

Study 2c

Effects of information on concerns

Procedure: Reading consent & T1 from Study 2b
- voice their greatest concern with participating in the study (open/ closed format?)
- treatment: information on concern (yes vs. no)
- measurements: willingness to participate
Design: pre-post between-subject RCT
Factor (treatment): Information on concern [yes vs. no]
- EG: information on voiced concern displayed
- KG: neutral information displayed (see on the right)
Measures (pre-post)
- willingness to participate
- Perceptions of being well-informed about study
- trust in research?

“Which of these potential concerns about the study do you consider the most significant?” t1p.de/concern-response

“Thank you for sharing your thoughts with us. We know that participants have different perspectives on this topic. So far, there has been little research on the concerns people have about participating in scientific studies. With this study, we would like to contribute to closing this research gap.”

Study 2c

Effects of information on concerns

	Read informed consent	Measure willingness to participate	Voice greatest concern	Measure willingness to participate	Treatment	Measure willingness to participate
Experimental Group (EG)	✔️	✔️	✔️	✔️	Information on concern: Concern-specific feedback	✔️
Control Group (KG)	✔️	✔️	✔️	✔️	Neutral information	✔️

Study 2c

Concern	Response
Where and how exactly will my data be stored? How can I be sure my personal data will remain secure and confidential?	Your personal data will be securely stored on protected servers at a specialized research data center that complies with GDPR standards. Only authorized researchers will have access, following strict data protection protocols to prevent unauthorized use or breaches. Data will be retained for at least 10 years in accordance with research integrity guidelines.
Will others be able to identify me and relate my data with my person?	Whenever possible, your data will be anonymized so that no one can identify you. In cases where anonymization is not feasible (e.g., video recordings or interviews), your data will be securely stored in a specialized research data center. Only authorized researchers who submit a request, transparently detailing their intended use of the data, will be granted access. No other individuals will be able to view or use your data.
What does data sharing mean? Who will have access to my data in the future, and how will it be used?	If you consent, your data may be stored in a specialized research data center. Researchers who wish to access the data must submit an application detailing their research plan transparently. Only approved researchers will be granted selective access, and they are required to delete the data after completing their analyses. They are not allowed to further distribute the data. Your data will not be shared with commercial entities or used for purposes unrelated to research.
If I withdraw my consent, what happens to the data that has already been collected? What if my data has already been analyzed or published?	You can withdraw your consent at any time by contacting the research team. After withdrawal, we will ensure that your data is no longer used in the study. This means that any data that can be linked to you will be fully deleted. However, results that have already been published in scientific research reports cannot be removed. In these publications, no one will be able to identify you.
Could my data be used in ways that I haven’t agreed to or that could harm me?	Your data will only be used for research purposes that align with ethical and legal standards. It will not be shared with third parties for commercial or unauthorized use. Any reuse of your data by other researchers must comply with strict ethical guidelines to prevent misuse. Researchers who wish to access your data must submit a transparent plan detailing their intended use and sign a contract binding them to this specific purpose only. Access will only be granted after signing this contract. They are not permitted to further distribute the data and must delete it after completing their analyses.
How can I be sure the data are handled ethically?	This study has been reviewed and approved by an ethics board to ensure that it meets ethical research standards. This includes evaluating potential risks, ensuring informed consent, and safeguarding participants’ rights and well-being.

Campell (2023)

What Are Participants’ Concerns About Sharing Qualitative Data? Though several studies suggest participants are open to having their narrative data shared, they also express concerns about the practice. Qualitative inquiry is a deeply relational method built on developing authentic, trusting relationships with participants, however, brief and situationally specific that relationship may be (Hesse-Biber, 2013; Rubin & Rubin, 2011). The degree of trust participants feel with researchers affects what information they choose to disclose, and they may not want all details shared with others (Broom et al., 2009; Campbell et al., 2019; Feldman & Shaw, 2019). For example, Yardley et al. (2014) conducted focus groups with research participants to discuss their views on sharing qualitative data with other researchers, and the degree of trust and intimacy they felt with researchers was a salient factor. The act of meeting directly with an interviewer and the back-and-forth dialog inherent in narrative methods helped them feel more comfortable disclosing details about their lives, and they expressed hesitancy that others might have access to that information. As a participant in that study noted, “But the thought that the stuff that I have could go off to another team at another time in another place [for] a completely different purpose is something I would want to balk at” (p. 106). Yardley et al. (2014) noted that participants remained open to the practice of sharing narrative data with other researchers, but they wanted to be informed ahead of time so they could decide how much to disclose in their interviews. Participants have also expressed concerns about how their privacy and confidentiality would be protected if their qualitative narratives were available to other researchers (Mozersky, Parsons, et al., 2020; VandeVusse et al., 2022; Yardley et al., 2014). In studies on sensitive topics (e.g., health, sexuality, victimization), participants were keenly concerned about the risk of re-identification and the consequences that might befall them. In Mozersky, Walsh, et al.’s (2020) study, 67% of participants expressed concerns about the risks of re-identification, including embarrassment, stigma, judgment, discrimination, and the possibility of identity theft. The risk of re-identification is higher with dyadic data, whereby the events being studied are necessarily known to another person as they are interpersonal interactions (Campbell et al., 2019; Finkel et al., 2015). In qualitative studies of violence and victimization (which are inherently dyadic), re-identification could pose significant safety threats to survivors (Campbell et al., 2019). Finkel et al. (2015) cautioned that some individuals may try to access data and breach confidentiality because they have ill-intent toward study participants. Thus, the risks of sharing qualitative data can be substantial, and there has been minimal research on how participants view these risks when deciding whether to agree to share their data.

Study 2c

Effects of information on concerns

Structural model only (without measurement models)

Questions

General: Idea for a journal? -> registered report?

Study 1: How to ideally collect log-data from past online surveys -> ask in LLiB?

Study 2: How to collect participants? Panel provider probably biased

Study 2b: What if participants don’t read the fictitious example? -> ecological validity? internal validity?

Study 2c: What does CG do?

Feedback (Lab Report)

Concerns: Teilnehmende bringen eher diffuse concerns mit “ich habe angst, dass andere über mich lachen”, die vorgeschlagenen concerns sind sehr spezifisch RDM
Unsere Responses auf die Concerns
- passivkonstruktionen, zu sehr RDM-orientiert
- zu abstrakt
- Sind unsere Responses formuliert, um die Teilnahme zu steigern oder ehrlich? (z.B. können die Daten leaken? Eigentlich nicht, potentiell aber immer ja)
- Mehr dialogisch, persönlich, “bring out the people in our research” (there are people that collect your data…)
- Antworten in Einfacher Sprache?
Sind wir wirklich an concerns interessiert (emotional level and response) oder eher an misconceptions (informational level and response)
Study 2c: Additional control variable: Experiences with studies
nicht nur “willingness to participate”, sondern auch “willingness to share data” abfragen -> äquivalent zu vielen informed consent Formaten, die beides separat abfragen

Thank you

Jürgen Schneider
ju.schneider@dipf.de

References

Brysbaert, M. (2019). How many words do we read per minute? A review and meta-analysis of reading rate. Journal of Memory and Language, 109, 104047. https://doi.org/10.1016/j.jml.2019.104047

Campbell, R., Goodman-Williams, R., Engleton, J., Javorka, M., & Gregory, K. (2023). Open science and data sharing in trauma research: Developing a trauma-informed protocol for archiving sensitive qualitative data. Psychological Trauma: Theory, Research, Practice, and Policy, 15(5), 819–828. https://doi.org/10.1037/tra0001358

Campbell, R., Goodman-Williams, R., Javorka, M., Engleton, J., & Gregory, K. (2023). Understanding Sexual Assault Survivors’ Perspectives on Archiving Qualitative Data: Implications for Feminist Approaches to Open Science. Psychology of Women Quarterly, 47(1), 51–64. https://doi.org/10.1177/03616843221131546

Fichtner, U. A., Horstmeier, L. M., Brühmann, B. A., Watter, M., Binder, H., & Knaus, J. (2023). The role of data sharing in survey dropout: A study among scientists as respondents. Journal of Documentation, 79(4), 864–879. https://doi.org/10.1108/JD-06-2022-0135

Geier, C., Adams, R. B., Mitchell, K. M., & Holtz, B. E. (2021). Informed Consent for Online Research—Is Anybody Reading?: Assessing Comprehension and Individual Differences in Readings of Digital Consent Forms. Journal of Empirical Research on Human Research Ethics, 16(3), 154–164. https://doi.org/10.1177/15562646211020160

Kuula, A. (2011). Methodological and Ethical Dilemmas of Archiving Qualitative Data. IASSIST Quarterly, 34(3-4), 12. https://doi.org/10.29173/iq455

Lamb, D., Russell, A., Morant, N., & Stevenson, F. (2024). The challenges of open data sharing for qualitative researchers. Journal of Health Psychology, 29(7), 659–664. https://doi.org/10.1177/13591053241237620

Masson, M. E. J. (1983). Conceptual processing of text during skimming and rapid sequential reading. Memory & Cognition, 11(3), 262–274. https://doi.org/10.3758/BF03196973

Mozersky, J., Parsons, M., Walsh, H., Baldwin, K., McIntosh, T., & DuBois, J. M. (2020). Research Participant Views regarding Qualitative Data Sharing. Ethics & Human Research, 42(2), 13–27. https://doi.org/10.1002/eahr.500044

Parfenova, D., Niftulaeva, A., & Carr, C. T. (2024). Words, words, words: Participants do not read consent forms in communication research. Communication Research Reports, 1–11. https://doi.org/10.1080/08824096.2024.2379832

Pedersen, E. R., Neighbors, C., Tidwell, J., & Lostutter, T. W. (2011). Do Undergraduate Student Research Participants Read Psychological Research Consent Forms? Examining Memory Effects, Condition Effects, and Individual Differences. Ethics & Behavior, 21(4), 332–350. https://doi.org/10.1080/10508422.2011.585601

Steinhardt, I., Fischer, C., Heimstädt, M., Hirsbrunner, S. D., İkiz-Akıncı, D., Kressin, L., Kretzer, S., Möllenkamp, A., Porzelt, M., Rahal, R.-M., Schimmler, S., Wilke, R., & Wünsche, H. (2021). Opening up and Sharing Data from Qualitative Research: A Primer: Results of a workshop run by the research group ,,Digitalization and Science“ at the Weizenbaum Institute in Berlin on January 17, 2020. https://doi.org/10.34669/WI.WS/17

Stieglitz, S., Wilms, K., Mirbabaie, M., Hofeditz, L., Brenger, B., López, A., & Rehwald, S. (2020). When are researchers willing to share their data? – Impacts of values and uncertainty on open data in academia. PLOS ONE, 15(7), e0234172. https://doi.org/10.1371/journal.pone.0234172

VandeVusse, A., Mueller, J., & Karcher, S. (2022). Qualitative Data Sharing: Participant Understanding, Motivation, and Consent. Qualitative Health Research, 32(1), 182–191. https://doi.org/10.1177/10497323211054058

Zuiderwijk, A., Shinde, R., & Jeng, W. (2020). What drives and inhibits researchers to share and use open research data? A systematic literature review to analyze factors influencing open research data adoption. PLOS ONE, 15(9), e0239283. https://doi.org/10.1371/journal.pone.0239283

Credit

Title page: Aziz Acharki on Unsplash

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Does Data Sharing in Consent Actually Reduce Participation?

Data sharing section in consent

Evidence so far

Research Questions

Study 1

Study 1

Design

Study 1

Measures

Study 1

Statistical analysis

Study 2a

Conceptual Replication (and expansion) of Study 1

Study 2a

Conceptual Replication (and expansion) of Study 1

Study 2a

Conceptual Replication (and expansion) of Study 1

Study 2a

Conceptual Replication (and expansion) of Study 1

Study 2a

Conceptual Replication (and expansion) of Study 1

Study 2b

Effects of data sharing and data type

Study 2b

Effects of data sharing and data type

Study 2b

Effects of data sharing and data type

Study 2b

Effects of data sharing and data type

Study 2c

Study 2c

Effects of information on concerns

Study 2c

Effects of information on concerns

Study 2c

Effects of information on concerns

Study 2c

Effects of information on concerns

Study 2c

Study 2c

Effects of information on concerns

Questions

Feedback (Lab Report)

Thank you

References

Credit